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11 June 2012

I had an appt today with a new NP. She specializes in rheumatology and that is her bigger concern right now than anything else. I got there a little early and had my paperwork all filled out. Thanks to Foxit PDF Editor I was able to type all my info after I downloaded the forms from the office's website. Much easier on my hands! When the nurse called me back, she kept telling me I needn't rush. But I wasn't rushing so much as I am conscious of the fact that I need to try to pick up my speed when I am on a flat surface with few obstacles. I tend to try to pick up the speed just because on that kind of surface, I CAN walk a bit faster. We weighed me and I let her know that my braces are 6lbs since I cannot take them off and stand up to be weighed. She took me into the exam room and asked if I could get up on the table. Yup. She stood close enough to grab me if I had a problem. She commented on the forms. Asked me who typed em up and when I said I did, she thanked me because so often, it's hard to read patient's writing. I said that is part of why I did it on the computer as well as how much writing hurts after awhile. She took my BP and it was a tad high. 130ish over 80something. She attributed it to me rushing. It was possibly that or the pain from this flare. She was REALLY nice. She did decide not to have me change to the gown for my exam, although it wouldn't have been a problem.

When the NP came in, she was really nice. Asked lots of questions, and in asking her questions she basically addressed all but one item on my list. The only thing we didn't go over was me wanting some Voltaren Gel. But I decided to wait because I know there had been shortages of it recently so I decided to see if that had changed before asking. Why waste her time and mine if there was a shortage still? She is concerned about lupus. She didn't say if her concern was RA plus lupus OR that I've been misdiagnosed all these years. I told her I'd been tested but always negative. Which means NOTHING really. Last I read, 5% of people with lupus were sero-negative. And I've read anywhere from 20-30% of people with RA are. I've only seen the 25% and 30% figures a few times; 20% is the common number of sero-negative people. She wants me on Plaquenil. And of course that requires the baseline eye exam for retinopathy. Of course she also did labs and a U/A. I hate trying to fill the cup given my hand issues. It's never easy. I got my blood drawn. The ladies in the lab at the internist's office were nice. I went in and they were trying to tie up things. And one of the ladies said she was ready to scream as she misplaced something she JUST had. The other one said not to scream since a pt was in the room. I told her go ahead. I've been around healthcare long enough to know sometimes you just need to scream. When the woman came over and asked where it's best to get my labs, I said it was her choice and offered both arms or the back of both hands. I told her some people have a lot of problems with my arms and the veins rolling a lot. And I have a lot of scar tissue from the 28 years of labs. So she decided to use the back of my right hand. The one who wanted to scream said they'd get it, they could get it from pretty much anywhere: arms, hands, feet, head. I laughed and said that I've had labs and IVs in all those but my head. I commented that I wouldn't watch her put the needle in but I wasn't gonna pass out or anything. I just found looking away lowers the pain. I found that out years ago. And then I mentioned that study I recently posted on the subject. She said they've told people that for years.

The NP will NOT start me on a biologic until my mouth is fixed, because it's a breeding ground for the germs that cause sepsis. I wasn't surprised. My teeth needed work before I went into the hospital and they worsened there. I am not wanting to risk sepsis at all. Been there, done that, got the scars to show. I wonder if I really need a biologic as it is. I am hesitant to use one because of my past with what happened because of Remicade. I wonder if using just an older DMARD, in my case Arava and now combining it with Plaquenil (I believe she said that was more for the Sjogren's but I'm not 100% sure) might be enough. I've had a number of flares in the last year, but a lot of it starts as a fibro flare that causes my muscles to be stiff and sore, plus the fatigue. That means I don't move as much which means my joints stiffen up more. So often that's what happens. It's rare to have a flare start with RA. I mentioned to her that it'd take a lot of Valium for me to be able to face the dentist and she said they'd put me out with all that needs done. Yay. I can handle that as long as I don't have to listen to the sounds of what they're doing. I hate my mouth being messed with. I also hate mouth pain. I can tolerate a good bit of pain without little complaint. My pain doc is amazed at my tolerance. But when it's mouth pain, I am not so good with that.

I also have to get x-rays and a DEXA scan. She's asked for hands and knees but not my feet since that would mean standing and that's kinda impossible for me! I got that appt scheduled for Wed. The eye doc is Thurs. and I go back to the NP next Mon. I absolutely do NOT think Gar needs to be taking off work that much in that short a time to drive me to the doc's. So I decided to use medical transport. I can certainly request the company he works for although it's not a guarantee I'll get it. I did tell them I HAD to have either a mini-van or a car as I cannot step into larger vans. Calling to schedule transportation was a hassle and a half. I see why clients get annoyed. Unfortunately many take it out on the drivers who have NOTHING to do with the company who schedules the transportation. The company that Medicaid has the contract with to do scheduling is one I don't think I've EVER heard anything good about. The people who had to deal with them at the nursing home ALL said it was a hassle. The people at the cab companies mentioned the hassle. Gar has had ONE complaint since he's been a medical driver and it was NOT a client complaint, it was the company that schedules transport and they complained over the mistake that occurred that left him at a dialysis center OVERNIGHT. The office manager/scheduler at the company he works for defended him, they pulled the GPS to prove he stayed within a few miles of the office. He did leave shortly after dropping the client off to grab a bite to eat, go to the restroom etc. And then later that evening he left for food and the restroom. So I knew before making the call that it wasn't going to be fun. And it wasn't. I had to repeat info 3-4 times. I can handle giving my info and then them reading it back to verify it, and she did that AFTER me having to repeat things multiple times. It was VERY annoying! Then since I had 2 appts. I figured she'd take my info for one, then take info for the second. OH NO! "I'm going to have to ask you to hang up and call again to schedule your other appt because of the high call volume we are experiencing today." They'd not have so much trouble if they didn't hire idiots who can't listen! I needless to say waited a bit to call back and I was SO hoping I got a different person. No such luck. I know they monitor calls or tape them and I know they have scripts at times, but I look at it this way, if the caller has addressed something, they are wasting the caller's time to repeat it multiple times! Even before requested the company Gar works for I said "I know you cannot guarantee this and it could be ANY company that this is assigned to but I'd like to request DiamondMed." She said "I'll put that in but I can't guarantee it." I was almost at the end of my rope with her because of having to repeat things so often and then her telling me what I had already said I knew. I finally said that I had already said I understood that and wasn't an idiot who needed told what I already acknowledged. Then I said I needed to add a stop at the pharmacy when I went home. She said she needed to know when they needed to pick me up at the doc's office. Now, how am I supposed to know when I will be done with a dr's appt? If I were going for an infusion or something that'd be different. Or even if it were a monthly appt like with Stacy where I could judge how long it would take. I have no clue. I told the woman I had no idea. My last appt was at 3:20pm and left there around 5ish. So I can't guess. I didn't wanna tell them a later time than I'd be and be stuck there waiting, especially after the office closes. But if I told them too early of a time, they'd come, wait a bit and then leave and who knows when I could get a pick up then. After I call they have an hour to get me. But, that doesn't mean they will wait very long on me if I am not done when I said I am done. And she told me that if I need to go to the pharmacy, I HAD to schedule a pick up time, they cannot do a will call. So I said forget the pharmacy. I'll figure that one out on my own then. Actually I will just hand Gar the script and he'll drop it off as he drives by of a morning and pick it up that evening when he drives back by. Or if he is in the area and has wait time then he'll pick it up and possibly run it to me. I was just trying to save him that trouble. I have GOT to find some time to go try my driving so I know if I can get my license or not.

I did get an idea of a good eye doc. It's an office that has both optometrists and an ophthalmologist. I checked out their site before calling them. One thing I noticed is they take care of diabetic retinopathy, which made me think they could do what I needed as the problem with Plaquenil is that it causes retinopathy. So I took the chance since they would work for me and called. When I explained what I needed, they said yes they could help me. And I didn't have to wait for the one day the ophthalmologist was there as their optometrists have the training to do everything the ophthalmologist does EXCEPT surgery. Ok, works for me. That seems to be a rare thing as most optometrists don't have the equipment or training to do the baseline exam. I did verify that I was ok starting the Plaquenil before my appt as it takes so long to really get in my system and it takes a bit of time to do the damage. Some sites I read say even up to a year after starting for doing a baseline. Just on my own, I'd say it'd not be good to wait a year. But it's not like it's instant either. I was surprised when I read the new ACR guidelines I posted the other day, they now say IF the first check is good and you don't have any symptoms, you can wait 5 yrs to do a follow-up exam. I was really surprised as it's always been every 6 mo if you have a more conservative doc or yearly if you have a less conservative doc. I'll find out how conservative mine is later on I guess.

Lab-wise, she ordered ANA with Reflex, C3 and C4, CBC with Diff, CCP Igg Abs, CMP, T4, TSH, and Vit. D (25-hydroxy). I know I looked some of these up but not all of them and it has been awhile. 

That was my appt. She was really nice. I liked her. When I checked my notes to see if we'd covered all that I wanted to, she had covered it all without me mentioning any of what was on there. I told her that and she said well she didn't have to ask most of her usual questions either because I provided such good notes with my pt info packet. I'd listed a number of things going back as far as I could recall. I included pics of my leg wound with the cellulitis. How it looked when we came home from MUSC and then what it looked like when it burst open and how it looked after they cleaned it up and then how it looked about a yr after it all happened. I wrote a short history of the hospitalization. A short list of each dx, when it happened and who dx'd me. I provided names, addresses and phone #s of prior docs. I even took the release and duplicated it for Dr T's office, Dr K's office, the hospital and the nursing home. I also signed the release to have them release info to Gar and my Mom if need be. I did forget to ask them to send the report to Stacy but I will add that to my list of things for next Mon. I'll also ask the eye doc his opinion on how often I should be re-tested.

Looks like things are falling into place now. I wish it hadn't taken so long. I honestly wish that the first doc I had at the nursing home hadn't retired. I LOVED Dr Wilson. He was so laid back. If I needed ANYTHING, all I had to do was go to one of the nurses I felt most comfortable with (and whose judgement I trusted) and tell them I'd like a med or needed a shot and if they thought it was a good idea, they told me and then made it happen; if they felt it was a bad idea, they told me and we either found an alternative or we tried what I wanted). When I complained about how my meds were scheduled, he told me to speak to the unit mgr and we could sit down and figure out a schedule that was better for me and he'd write the needed changes. His son is an internist as well but their office is in Conway and I didn't wanna have to make the trip up that often, although I don't mind going every 2 weeks for the ministry group. So I guess if I had to, I would have checked to see if he was taking patients. Although no one I know knew much about him. One thing would have been convenient, Dr L, who did my braces was right next door. I loved Dr L and his nurse Danni. Actually the whole staff, Miss Pat and Nancy. are both very nice. I made a comment on FB one day about the joint on my braces being stiff and squeaky and how I wished it was as easy to get MY joints to loosen up and stop popping as it is to get the brace joints to loosen and quit squeaking. She said I should make my appt to have Dr L look at em. I don't think it's enough for that as it happened while I was in the nursing home and Jim called Dr L and that was the fix. They're not squeaking as bad as they had been while it was winter and when it's rainy. Weird, the brace joints react kinda like my own do with the weather!

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